Therese Humphrey Ball

November 3, 2022

Caring for patients was my life’s work as a registered nurse. While I’d seen my patients struggle with drug prices, I began to see the issue firsthand in my own life when I was diagnosed with multiple sclerosis in 2003. When I was first prescribed Copaxone for my MS, it cost me $1,800 a month and wiped out my savings. I received grants every year for my medications from 2012 to 2016. Without the grants, I would be in the Medicare donut hole after just one month. When I was unable to get a grant in 2017, the same medication cost $6,000 a month and forced me to go off of it entirely for three months. I also went off my pancreas enzymes for 6 months, all because the cost was too high.

While off my medication, I began having difficulty with my cognitive function. I felt so frustrated as I developed these cognitive difficulties. I work really hard to keep my life in order and my memory intact even with MS. It was devastating. The prohibitive price of my prescription is the reason for these problems. If my Copaxone were affordable, it wouldn’t have been easy, but I would’ve been able to keep fighting to keep my life in order and protect my memory. The high price of my medication took that power away from me. I was left dejected, unable to get the care I needed, and powerless against my condition. Because of the drug companies’ greed, I lost something so valuable –– and I’m not the only one.

Lisa Trainor

November 3, 2022

When I was 16, I experienced a trauma that left me with severe fibromyalgia and PTSD. At 19 years old, I was officially diagnosed and began taking prescription medication to manage my symptoms. One of the medications I take, Vyvanse, has made an incredible difference in my quality of life. Unfortunately, this relief comes with a steep price tag of over $1,000 a month. For the two years I’ve taken this medication, we’ve been able to afford it because of my husband’s insurance. But I’ve always lived in fear of what would happen if we were to lose coverage and have to pay the full cost of the drug.

This summer — in the middle of a terrifying pandemic — this fear became a reality. Due to a recent change in my husband’s employment, my family has been left without insurance for the last two months. We can’t afford any of the coverage options available to us, so we’ve been forced to pay for my prescriptions out of pocket until my husband’s new job begins.

Because of Vyvanse’s steep price, I made the difficult decision to stop taking the drug completely. There’s no generic alternative, so I’ve had to take a medication that doesn’t work as well. Instead of focusing on my health, I’ve had to worry about how I’ll cover the cost of my next prescription. And as an active member of the chronic illness community, I know my story is not unique.

Noelle Tuominen

November 3, 2022

I’m a mom to two children with type 1 diabetes. My daughter and my son were each diagnosed at 1 year old — they now are 4 and 1. We quickly realized that keeping people with type 1 functioning and healthy is incredibly expensive, especially because of the skyrocketing cost of my childrens’ insulin. When my kids turn 26, they will no longer be allowed to stay on my insurance, and they will face the high price of their insulin alone. Many parents of kids who need insulin have to caution their children from a young age to make life decisions based on affording their insulin including choosing their careers due to insurance coverage. This breaks my heart, that parents are literally telling their kids not to go after their dreams, all because they will be saddled with the unjust prices of insulin for the rest of their lives.

The drug pricing system is so broken. It needs to change, so parents don’t have to tell their kids which dreams to pursue. I won’t tell my children they can’t follow their dreams. Instead, I’ll fight hard to lower drug prices, so the price of insulin won’t ever dictate their very bright futures.

Lynn Scarfuto

November 3, 2022

I’m a retired nurse, having worked with cancer patients as a nurse navigator for nine of my 25-year career. My job was to work with cancer patients to ensure they received the best treatment possible. After retirement, I was diagnosed with chronic lymphocytic leukemia, and later, lung cancer. My journey with cancer has not been easy. I had a thoracoscopy to remove the right lower part of my lung and will have to follow up for five years to ensure the cancer hasn’t returned. My CT scans have all been negative for recurrence of the lung cancer, but my leukemia still needs treatment.

My oncologist prescribed Imbruvica, a single-agent oral chemo/kinase inhibitor, to treat my leukemia. I don’t secure long-term funding to cover the astronomical cost of my prescription, I don’t know how I’ll be able to afford treatment. I spent my life working to make sure my patients had the best treatment possible. Now, I am terrified I won’t be able to obtain those same resources. As a retired nurse and cancer patient, I have a first-hand understanding of how our system works. Patients like me shouldn’t be denied access from receiving treatment because of pharmaceutical companies’ greed.

Valerie Gacula

November 3, 2022

I live with rheumatoid arthritis, fibromyalgia, and bipolar disorder, and I’m advocating for affordable prescription drugs because I know what it’s like to live without. I’d also been taking Effexor and Lamictal for the past five years for bipolar disorder. My intention has always been to return to work and be a contributing member of society while living with these conditions, and my medications allow me to function and work toward that goal. But recently I have had problems affording my medication. I have been forced to think about what I would be willing to give up in order to have access to my drugs again. People shouldn’t have to choose between not having their medications or sacrificing other parts of their lives to afford them — and that’s why it’s so important to lower the price of prescription drugs now.

Kami Guiden

November 3, 2022

I’m 33 years old. For just over 20 years I’ve lived with Crohn’s disease, an incurable and chronic and inflammatory illness of the gastrointestinal tract. I also live with celiac disease. Affording my medications to manage my conditions is always on my mind. I absolutely have to maintain a job with sufficient coverage to pay for my expensive drugs. But the drugs I need are so costly; job to job, I live at the mercy of drug prices and worry about if and how I will be able to afford my next infusion or refill. I’ve had to wait for my paycheck to deposit before getting refills, ration my prescriptions, and stop taking my drugs altogether because of the prices.

Leah Clark

November 3, 2022

When I was 12, doctors diagnosed me with Crohn’s Disease, celiac disease, and psoriasis. I take Remicade, an infusion drug administered via IV. Remicade costs around $13,000 a treatment — a price I know could be devastating to my life and y future.
I believe that no one should have to suffer because they cannot afford a prescription drug they need.

Kat Schroeder

November 3, 2022

Since the age of 9, I have been living with type 1 diabetes. There was a time in my life when I experienced a gap in comprehensive insurance coverage. I was forced to take drastic measures in order to get access to the insulin I needed to survive. I happened to have a friend who was a nurse in a hospital. They often have patients who are prescribed a full vial of insulin and if the patient doesn’t take it home with them, the policy is to toss it. Instead of tossing it, she would pocket it and bring it to me. That is what kept me alive.

Without the insulin I needed, I could not properly manage my diabetes. Because of this, I now have the beginnings of retinopathy and diabetic kidney disease, which could cause me to go blind or need an organ transplant later in life. No person should have to live day to day wondering how they are going to afford the medicine that they need to survive


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.

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